Progeria: First black child with rare aging disease

Most kids are in a hurry to grow up. But for 12-year-old South African Ontlametse Phalatse, growing older is not a choice. This small girl with a big personality is one of only 80 children in the world diagnosed with progeria, a premature aging condition. She's also the first black child with the fatal genetic condition.

"I call myself a first lady because I'm the first black child with this disease ... Which other black child do you know with this disease?" she told the Associated Press.

Children with progeria are born looking healthy, but soon display characteristics of accelerated aging, such as failure to grow, stiff joints and loss of body fat and hair. What's it like to live with progeria? Keep clicking for an inside look at Ontlametse's life...

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Ontlametse goes to school along with all the other kids her age. She's a bright pupil, but has been scorned by classmates, teachers and others who think her small, skinny figure means she has AIDS.

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Ontlametse may be the first black child to be diagnosed with the disorder, but children with progeria look remarkably similar despite different ethnic backgrounds: small and bald with oversized heads, eyes that bulge a bit, gnarled hands. They suffer from thinning skin which has a network of blue veins showing on the heads of white children.

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Most children with progeria die at the age of 13, almost exclusively from heart disease, commonly suffering high blood pressure, strokes, angina, enlarged heart and heart failure.

But the disease doesn't stop Ontlametse from living a normal childhood. Here, she is pictured in her "Hannah Montana" bedroom - created for her by "Reach For A Dream" foundation, which fulfills the dreams of terminally ill children.

Credit: AP Photo/Denis Farrell

In her rundown brick home in Hebron, Ontlametse does her homework, reads, watches TV and has daily chores like washing her socks and cleaning her shoes. She can't play sports or even a game of hopscotch because physical exercise tires her out. Here, Ontlametse checks her school program for the day.

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Like most kids with progeria, Ontlametse was born looking normal - but her mother, Bellon Phalatse, soon realized that something was wrong. The baby suffered constant rashes and by the time she was 3 months old Phalatse thought she had a skin disease.

Before Ontlametse celebrated her first birthday "her hair was falling, her nails weren't normal, the skin problems, we were going up and down to the doctors."

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Here, Ontlametse concentrates during a math class at the Lorato Primary School in Hebron (about 50 miles north of Johannesburg), South Africa, on August 24, 2011.

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At school, Ontlametse wears a hat, self-conscious of her bald head. One of the things on her wish list is a specially designed wig.

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Ontlametse has two friends in her class but says not all her classmates are kind. But she doesn't let them bother her.

"I don't care what people say about me," she says, making a throwaway motion with a hand misshapen with arthritis, knobby fingers and discolored nails.

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In this photo, Ontlametse sits at her desk as her best friend, Katlego Mathabe, reaches down to her level during class.

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Ontlametse, who is half the size of her classmates, stands on a desk surrounded by her classmates.

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Only two Africans have been diagnosed with progeria and both live in South Africa, likely because the country has some of the best medical care on the continent.

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Each school holiday, Ontlametse and her mom fly to the U.S., where she participates in research funded by the Progeria Research Foundation at Children's Hospital Boston. It gives her access to cutting edge drugs that are not yet commercially available.

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"I would like to be a psychologist," Ontlametse says, "so that I can work on the problems of other people and so that they can accept the way that they are because they can see that I accept the way I am."